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Quaderni di Psicoterapia Cognitiva - Open Access

MALATTIE RARE E PSICOTERAPIA COGNITIVA

No. 56 (2025)

Integrated and Transformative Communication Model of the Self (CITS) and quality of life in rare diseases: A pilot study on patients and caregivers

DOI
https://doi.org/10.3280/qpc56-2025oa21769
Submitted
dicembre 23, 2025
Published
2026-01-12

Abstract

This pilot study, based on an online survey, involved 844 participants, including 437 people with a diagnosed rare disease or genetic syndrome and 407 caregivers, using a stratified sampling design by diagnosis, gender and geographical area. The aim was to explore the relationship between the communication of diagnosis, psychological support and quality of life, within the framework of the Integrated and Transformative Communication Model of the Self (CITS), grounded in post-rationalist theory, attachment theory and the 5W scheme.
Descriptive, inferential, factorial, path analysis and SEM results show that psychological support is significantly associated with a better quality of life among patients, while caregivers display higher levels of inner turmoil despite reporting, on average, a better perceived quality of life for the assisted person. Both patients and caregivers are more likely to prefer early communication of diagnosis, with an increasing proportion in favour of a gradual “seed planting” modality, especially when psychotherapeutic support is available.

Findings support the CITS model as a clinical framework to guide diagnostic disclosure and psychological interventions, confirming the central role of the psychotherapist within a multidisciplinary team devoted to rare diseases.

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